Hi, it’s Patrik Hutzel from INTENSIVECAREHOTLINE.COM where we instantly improve the lives for Families of critically ill Patients in Intensive Care, so that you can make informed decisions, have PEACE OF MIND, real power, real control and so that you can influence decision making fast, even if
you’re not a doctor or a nurse in Intensive Care!
This is another episode of “YOUR QUESTIONS ANSWERED” and in last week’s episode I answered another question from our readers and the question was
My Mom Is Critically Ill In ICU And The ICU Team Is Giving Up On Her. What Should I Do?
You can check out last week’s question by clicking on the link here.
In this episode of “YOUR QUESTIONS ANSWERED” I want to share this email from one of our clients Toni as part of our 1:1 consulting and advocacy service! Toni’s mom is in ICU and she is
complaining about how the ICU team is treating her mom. Toni is thankful with the intensive care hotline because it gives them the confidence to challenge the ICU team and continue to fight to get their mom home with tracheostomy.
ICU Hotline Gives Us the Confidence to Challenge the ICU Team and Fight to Get our Mom Home with Tracheostomy.
Part 1
Hi Toni,
The ventilator picture you have sent pretty much confirms that she’s stuck on a ventilator with lots of support. She’s dependent on 80% of oxygen which is a lot. The air we are breathing consists of 21% oxygen.
I wouldn’t ask anyone if you’re allowed to take pictures, just take them. You can make your own decisions. Just ask them what they have to hide.
Happy to get on a call tomorrow.
Kind regards,
Patrik
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Hello Patrik,
Thank you so much for the information today.
My sister was told she wasn’t allowed to be taking photos so she was able to get this one before they came in and told her to not take any. Your email was very helpful.
I am going to be sending a request to the hospital tomorrow and request a meeting to address your findings. I wasn’t sure if you have any advice and if you would be willing to be on a call.
We really feel we need to move quickly with this and any advice you have we will take! I do want to have you as a consultant until we get answers.
Please let me know your thoughts and if you would be available tomorrow to be on a call where we address our clinical concerns.
Thank you so much,
Toni
Hello Toni,
She can be moved out of the ICU and we can help her to get to another ICU. Let’s see what we can do after the meeting as scheduled as we need to see a clear clinical picture of your mom’s current health situation.
We have intensive care at home
But unfortunately we are unable to provide services in your area, but we can continue with the consulting and advocacy service for families in intensive care, therefore we can do two things for you:
1) Help you get the outcomes you want for your mom by guiding you through the process.
2) Help you set up intensive home care once your mother is able to. There are very few if any home care service providers that can look after ventilation/tracheostomy at home since it’s such a highly specialized area.
Kind regards,
Patrik
Hi Patrik,
Thank you! This has been so difficult.
I don’t have a time yet for a call but will request a meeting tomorrow and I will let you know as soon as they give me a time. I will book the hour session as well.
Given what you see, is there any chance of us getting her moved out of there? And if her condition is too advanced at this point is there any possible way we can have her be at home? I can’t believe I am texting these words. I truly appreciate everything!!
Thank you,
Toni
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Hi Toni,
You’re most welcome, Toni.
Will be waiting for your update.
Regards,
Patrik
Hello Patrik,
Thank you again! I will let you know once I hear back about a meeting time.
I will register for another hour and again, we will continue to use your consulting through all of this.
Your information has been made us feel like we have our power back. Your website is so comforting and I can’t tell you enough how thankful we are.
We felt so incredibly helpless and then I found your site and after your call I knew we still had a chance to fight! I will be in touch tomorrow!!
Regards,
Toni
Hi Toni,
That’s nice to know Toni.
Consulting and advocacy for families in intensive care is bread and butter for us.
Support would be to guide families how to manage intensive care teams, asking the right questions.
99% of families in intensive care don’t know what they don’t know, they don’t know what questions to ask or how to manage intensive care teams to get the outcomes that they want and deserve.
And we will continue helping you with all of the above.
Kind regards,
Patrik
Hi Patrik,
We are waiting for a call back for a meeting. I am going to get online and book an hour session. I sent the request for a meeting early this morning and have not heard anything back.
We also requested it through her nurse to relay to the doctor we want a meeting. The original Pulmonologist, Dr. Batallones, was one of the doctors that was removed from my mom’s care after his horrific conversation with my family on the first day.
We were told he would not be over seeing her care and they would be consulting with a Pulmonologist from the sister hospital. My sister just received a call from my mom’s nurse asking if Dr. Batallones would be allowed to see our mom now.
She told her Dr. Chan, Head Senior Care, assured us Dr. Batallones would not see her during her stay due to the hostile meeting he had with my family and they needed to have another Pulmonologist attend to her.
I have a feeling they are in a little bit of a panic right now. I will let you know once I hear back about a meeting time.
Thanks again!
Toni
Hello Toni,
Thank you Toni for the heads up.
Irrespective of what they said to you now, we will focus on the clinical updates because of your mom’s wishes.
Of course they will say that a transfer to another hospital isn’t possible, but again let’s deal with it on the call.
I will have another look online on your mom’s file to look for any clinical updates.
Extubating against your and your mom’s wishes is basically murder if she wasn’t going to survive.
It doesn’t matter what they think or they want to talk about, it’s more important what you want to talk about.
We will argue that extubating your mom is most likely against hospital policy and also against state law. Again, it comes down to following their policies and procedures and honoring the advanced care directive for your mother.
Do you have the advanced care directive for your mom in writing?
Kind regards,
Patrik
Hi Patrik,
We called in to let them know we had to reschedule the meeting and have one set for tomorrow at 8AM Eastern. I’ll give you the call in info.
They did manage to say the purpose of the call was not to talk about anything clinical but rather speak to extubating our mom.
They actually said our mom changed her mind about being on a ventilator prior to her intubation. I told them again she wasn’t of sound mind and that we were told by Senior Social Services that she had the right to a third party present and they could not approach her in her state to have anything changed.
They told us that if we do not agree to extubate and “let her go” over the next day or two that they would be forced to extubate her when we are not there because she changed her wishes. So this is getting ugly.
They also told us there is no chance of getting her transferred to another hospital because she is an elderly patient, on a ventilator and it will never happen. We said we would exhaust all options and if no transfer is possible then we would transport her home. It was a horrible call.
The doctor told us the readings from the X-ray were so small and corrected themselves so there was no need for a chest drain or further
investigation. So I asked for the X-rays after 2/23 and they told me I can’t access them.
I said we can have them and I wanted them prior to our meeting. Not sure if that will happen. But they were not happy about having a third party on the line and they told us they were offended because they are highly respected doctors and it is appalling that we are having anything looked at.
I just wanted you to have a general idea of what tomorrow will be like. They are very arrogant but I’m sure you have dealt with that more often than not.
Thank you,
Toni
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Hello Toni,
I had a look at the arterial blood gas on 2/25 and the result is average given the level of ventilation support she was on at the time.
One could argue that a chest drain might have helped the situation.
Regards,
Patrik
Hi Patrik,
Thank you!! We told them we hired a clinical consultant and told them you were an ICU nurse.
Our main goal is to find out why she was intubated and then an explanation of what happened after the punctured lung?
They were extremely annoyed yesterday when we said we wanted to ask clinical questions and they said the reason for the call was only to talk about extubation so hopefully you can find out why she was intubated on the 2/21 when we received a call on 2/20 that she was going to be discharged and what action was taken when the results of the X-ray came back on 2/22?
I also wanted you to know I had a lawyer call me today that was a referral and he is very familiar with this hospital.
He told me they do not have any right to change our mom’s directive and he actually laughed and said they should know better.
He knows the head CEO and is calling him in the morning to see about getting our mom home.
I recorded part of the call today and I have to tell you when you challenged them on the tracheostomy and the woman said she can’t go home on a tracheostomy because she’s ventilator dependent.
Your response silenced them!! I mean for 8 seconds of silence!!!
I knew it was powerful during the call but when I listened to it again it was incredible!! Thank you again for everything.
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You gave us the confidence to challenge them and continue our fight to get her home!! I will keep you updated as things unfold but thank you again for truly helping us!!! Have a great night!
Kind regards,
Patrik
